Tuesday, November 27, 2012

I know, there was some song or movie with that title. I've never heard/seen it, just heard people make references to it. So here I am, blindly refering to something I know nothing about.

But it came to mind today as I was asked about every individual member of my family, and some others that aren't my family, if they were alright (genetically).

And, they're alright. The kids are alright.

Today we met Dr. B (we'll call him that). Dylan's genetics doctor. We went in to that doctors office not knowing what to expect, only knowing that we were going to be pretty upset if this was just a "meet the doc" type of appointment. You know, the ones where they just lay out a plan of action but don't actually start it. You see, I have been at my grandmothers house since Thursday, only having returned to my whole family this afternoon. We (my mother, Dylan and I) stayed so long so that we would not have to make 3 trips in a week and a half. One for turkey day, for the appt, and then for my baby shower this Saturday (!!!!!!!!). If we had just been there for a plan of action lay out, we would have felt.... silly. That's putting it lightly.

Turns out Dr. B had not had the chance to look over Dylan's chart, so he knew very little about Dylan aside from what he and Dr. Veda had discussed in passing. So we relived Dylan's entire life, age by age, milestone by milestone......born on his due date, sat at 7 months, walked at 11 months, didn't speak a word until 2.5 yrs. That kind of stuff. Then we talked about the hard stuff, like Dylan's "episodes" (hospitalizations) and things that lead up to them. We talked about Autism and how close he came to a diagnosis, and he seemed to sort of laugh at that Child Psychiatrist that would see all the symptoms of it, have a child come 2 pts away on the C.A.R.S (childhood autism rating scale) evaluation and still send you home saying "what you have is a moody irritable child, not an autistic child" (oh, yes she did.). So Dylan's chart still says he is Autistic, even though my mama heart has wanted that diagnosis at times, mourned that he didn't get it (imagine the therapies that would have been available to my child with that diagnosis and who knows where we would be, perhaps someplace better?), and promptly put on my big girl panties and moved on. It will follow us around, mocking us.

Sparing most of the mumbo jumbo doctor talk, and the horrible experience of "let me take a look at him", we learned that a low carb/ low sugar diet may work for Dylan and it may not. It's not a sure thing, it never has been, it's only been shown to "help" and it may not even help Dylan at all. His spinal fluid has not consistently shown elevated levels of that enzyme. The only thing positive he said about it, was that he has seen people with Dylan's enzyme issues do very well with low glucose. And I'm a little fuzzy on that, I was squawling.

So despite my best efforts to make Dylan less susceptible to brain inflammation, it may not do a single ounce of good. I can keep him in a low stress environment, low carb/sugar, away from sick people, unnecessary vaccinations and he can still fall ill... which I would of course blame myself for not trying hard enough to do right for him. What's a mother to do? Try and try anyways? Just try to make life as normal as possible for him? Sit around and wait for the next time our lives turn upside down?

I guess that's all I can do.

So for now, we had more blood drawn. We'll know more in March. And we left wounded.

Friday, November 16, 2012

The ingredients: I can't supply a great recipe because I was winging it mostly, but I ground some almonds in the food processor and got about 1 and 2/3 a cup of almond flour. 1/4 cup oil, 1 tsp baking soda, 1/2 tsp salt. 2 TB honey, 2 eggs, 1/2 tsp guar gum (thickener and binding agent) and around 3/4 cup of sugar free chocolate chips. Super delish and the kids loved them!

Like I said, they were delicious and chewy, and the kids loved them!

I also made grain free, yeast free bread. It makes a short loaf, but it's bread just the same. Here is the Recipe

I made grilled cheese with it last night and french toast this morning. Let's just say I am enjoying some old favorites once again :) This bread is much more expensive to make than regular bread, but there's no kneading involved and no rising so I'd say it's an even trade.

Tuesday, November 13, 2012

I am full fledged in the Christmas spirit! Quite early this year, but I wish the Christmas season lasted longer than a month. For everything that goes on, it certainly should. I'm addicted to listening to the Traditional Holidays channel on my tv (I have Dish network, it's channel 73 if you are interested). It makes me want to drink hot cocoa all day and make cookies...

Anyways, We have 3 kids, and Christmas can get expensive for Santa Claus. So in the past 2 years I have developed a knack for the crafty and I have begun making many of the gifts we give, all year round. Saves a lot of money, and it's an excuse to craft. I have plans for several homemade gifts for the kids this year and I have already begun making them!

Wallets

The boys get allowance every week pending they do their chores and they need new wallets. These aren't the wallets they will be receiving, these are extras I made, and I would love to make one for your kid(s) at about $4 each!

Dylan's mail man attire

Dylan loves to play mailman and write or draw on papers and fold them up and bring me my "mail". So in the spirit of pretend play, he gets his own mail set. The felt envelopes open up to hold papers. The messenger bag was made from a pair of thrifted brown pants.

Super hero masks and capes.

Capes not pictured because I haven't actually sewn them all yet. This is the red one and it will have a matching Spiderman cape. There will be a black mask with matching batman cape and a blue mask with matching Captain America cape. (or as Jude calls him Ca' 'Merica)

We are making them other gifts that I would rather wait to share when they are made because they are awesome... Making is so much fun!

Friday, November 9, 2012

So, in my quest to feed my family low carb snacks and meals I am absolutely trying to find low carb low sugar substitutions for every day goodness.

Today's win was a chocolate milkshake!! Which actually wasn't a milkshake at all. It was made with yogurt and an Atkins vanilla protein shake (1 carb and 1 gram of sugar). I used the Atkins shake because I was out of milk... I won't normally use shakes to make this, but since I did, I did not have to add sweetener like I would have if it was just made with milk. It was a hit with the boys, so here is the recipe:

Add all the ingredients in your blender and blend until combined. You can add ice to make it a frozen treat. I did not because I am out of ice too (ice maker is broken so we buy ice)

If you are using plain milk instead of the atkins shake, add more sweetener to taste.

Note to all you Atkins dieters that know that yogurt is not low carb:

Homemade yogurt that is strained exceptionally well is relatively low carb. The whey that is removed in the straining process contains the majority of the carbs... I've researched it. 1 serving of homemade yogurt strained to ridiculous thickness has around 8 carbs. Considering the recipe has 9 carbs in it and split between 3 boys, it's low carb.

Wednesday, November 7, 2012

Hayden woke up today and suddenly could read. I mean, he could read before, but he wasn't retaining words very well and would have to sometimes sound out everything including sight words he already knows. That was really messing with his reading comprehension so often I would read what he had just read back to him so that he could follow the story. He would often get bored with the story and just not want to read it because it was overstimulating. I don't suspect dyslexia or any other attention or learning problems with Hayden, but he did have touches of issues in some places that would make you consider it now and then. He is 6 and 1/2 years old.

(I often forget that Hayden is only 6 and 1/2. He is exceptionally tall for his age and very independent. He can work most electronics without assistance, he teaches me things sometimes, lol. He helps me with Jude so much and even helps Dylan, especially when his shoes are on the wrong feet or his clothes are on backwards. I always tell people it seems like Hayden should be like, 9 or 10 or something.)

I decided last week that we were done with phonics worksheets and all that busy work. My kids know the letters, know the sounds they make, know about consonant blends and long and short vowels... so all there is left to do is just read. Read everyday. Read everything. So I took them to the library and they picked out readers that contained stories that they were interested in. Hayden got a Spiderman book and Dylan a Thomas book. Dylan still didn't care much about his, but Hayden! Hayden wanted to read me that book all day. He even took it with us to Jackson for Dylan's appointment. It was like, suddenly, when the subject matter was interesting, rather than generic sentences off of worksheets and random short stories, the words would come together and make sense. Today he has read me 4 chapters out of a book we got from the library. It is an early reader, but there are many words in it that he doesn't know, and he is sounding them out if he doesn't know them and following along awesomely. It's like a light went off in his head or something.

I'm coming to realize that school doesn't have to mean busy work and lessons and all of that. My kids are learning how to read... and HOLY CRAP, I taught them.

Lately I've been feeling like I just don't know what I'm doing anymore. The decision to lessen the worksheet load and learn by real life wasn't easy for me to come to. What about what everyone will think, when they know my kids don't do pen and paper school work like public school kids do? Well, who cares. My kids are reading, telling time (Hayden consistently correctly and Dylan sometimes switches the hands around, but he has the right idea) and counting money... like they should be doing. They aren't doing worksheets about it, we are using real money. We learned to skip count with M&Ms. And we read, read, read, read every single day.

Monday, November 5, 2012

Today I find myself in a very mellow, almost wounded mood. My spirit is a bit sunk in. I'm discouraged, uncertain and feeling a bit raw and vulnerable.

I'm writing this just minutes after making a chocolate avocado mousse for the wildboys and they were quite verbal about how they did not like it. I liked it. Perhaps it was too sweet. Perhaps I should use cocoa powder instead of the bakers cocoa blocks that you melt. My avocado did not "whip" in the food processor. Instead, it pureed, which gave the pudding a grainy texture. Much to the wildboys displeasure.

It frustrates me to no end to try out new recipes using alternative ingredients and have the whole thing flunk. I just want to make better choices for my family and get the nutrients and vitamins in them and take the bad stuff out. Failed recipes are a waste of time, money and they generate dishes in the sink. They would love it if I whipped up a batch of instant pudding and slapped that in front of them, but I wanted them to eat the healthy fats found in avocado!

We saw Dr. Veda Friday. The visit went well except he asked me how I was feeding Dylan, to which I responded truthfully that he is mostly gluten free, but it's hard to consistently cook/feed him that way so it's about 50/50 right now. He told us that at Dylan's last lumbar puncture, his spinal fluid showed elevated levels of PDH. PDH is an enzyme that processes the carbs that we eat. With correct levels, our bodies can process carbohydrates normally. With elevated levels, you would have to restrict carbohydrates and sugar.

I just don't know a lot about this right now. I've been reading about it some, but honestly, it's not easy to understand. If I had a PhD, I probably could. But even my advanced google skills are failing me. All I know, until we see the genetics doctor after Thanksgiving, is that Dylan needs to eat low carb/low sugar/no sugar. That isn't even confirmed that he has something that would need those restrictions, not until genetics confirms it. But once confirmed, Dylan will have to eat that way probably the rest of his life... or continue getting sick. Sounds like an "easy" fix, doesn't it? Well, lots of things sound easy, but just aren't that simple. Dylan is 8 years old. He has enjoyed a wide variety of healthy and junk food in his 8 years. Just suddenly saying, "Hey Dylan, you know all those crackers and sandwiches and candy and cakes that you like? Well, you can't have them anymore. Sorry, dude." Trust me, I know what it's like to have restricted eating and being faced with events and family gatherings where there is maybe one thing there I can eat. It's extremely hard and sometimes makes me cry. And I'm 27 years old! Then, what about the other wildboys? Hayden and Jude won't be allowed to eat those types of foods around Dylan, as we won't keep them in the house. So will they develop some kind of complex about having to eat yucky stuff because of Dylan?

Obviously I'm still in the freak out stage.

Dylan is a big struggle in my life, and I've noticed he takes up a lot of my blog. I do have 2 other kids that are doted upon equally, but Dylan just takes up so much of my brain. I'm struggling to teach him to read, to feed him correctly... and honestly, he hasn't been very nice lately. Steroids don't bring out the best in anybody, and if your child is taking them, it won't bring out the best in you. I know he's just a kid, and doesn't mean to be rude...well- he does mean to be rude, but I know it's not coming from a hateful place in his heart, it's just the 'roid rage talking. But it's so hard to be patient with.

I know that his steroid treatments won't last forever (7 more weeks, god speed!!!!!!!!!!!) and one day we'll fall into a nice groove of eating well and being nice again. But until then... Boo.

Thursday, November 1, 2012

30 weeks!!

The pictures in the green shirt are from today, after my doctor appointment and the one in the top right corner is my 30 week shot when I was pregnant with Jude. I feel like I was much bigger with Jude, but I was at least 30 lbs heavier so maybe that explains it.. Also, Jude was breech the whole time which made my stomach poke out more and this youngin' has turned head down already, which is nice of him. Doesn't matter though, Jude broke the mold so Wesley will have to come via c-section as well. Aren't brothers nice?